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Mom on mission to help son get medicine for rare disease

A mother was thrilled when she heard of advances in medicine by a Boston-based pharmaceutical company, but when she heard the price, she took on a mission so her son, and others, can get the help they need.

A mother was thrilled when she heard of advances in medicine by a Boston-based pharmaceutical company, but when she heard the price, she took on a mission so her son, and others, can get the help they need.

Updated: 6:41 PM EDT Oct 10, 2016

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Mom on mission to help son get medicine for rare disease

A mother was thrilled when she heard of advances in medicine by a Boston-based pharmaceutical company, but when she heard the price, she took on a mission so her son, and others, can get the help they need.

WEBVTT OURNEY TO DRASTICALLY LOWER PRESCRIPTION PRICES. ReporterJULIE ANNA IS A WOMAN ON A MISSION. >> I WANT TO MAKE SURE THEY RECEIVE THEIR MEDICINE. Reporter: SHE FLEW IN SPECIFICALLY TO MEET WITH VERTEX PHARMACEUTICALS WHO MADE MAJOR STRIDES IN CYSTIC FIBROSIS RESEARCH AND DRUGS. HER 3-YEAR-OLD SON ELY WAS DIAGNOSED AS AN INFANT. >> THEY IMPROVED WITHIN THE LAST YEAR, YEAR AND A HALF. >> SHE IS THRILLED BY THE ADVANCES AND NOT HAPPY BY THE BOTTOM LINE. >> THE PRICES ARE IN THE HUNDREDS OF THOUSANDS OF DOLLARS. >> PEOPLE LIKE MY SON ARE VULNERABLE HAVING A RARE DISEASE. YOU ARE ALSO VULNERABLE TO HIGH PRICES OF DRUGS. >> SHE CALLED IT PRICE GOUGING AFTER RECEIVING MILLIONS OF CHARITY DOLLARS FOR RESEARCH AND DEVELOP -- DEVELOPMENT. >> IT IS PROFIT VERSUS COMPASSION. >> SO FAR SHE HAS 12 FEE,000 SUPPORT -- 125,000 SUPPORTERS. JULIE ANNA'S VISIT WAS A REAL REMINDER ABOUT WHY WE COME TO WORK EVERY DAY TO BRING NEW MEDICINE TO ALL PEOPLE WITH CYSTIC FIBROSIS. THE COMPANY DID NOT ADDRESS THE ASSERTIONS OF PRICE GOUGING. ONE MOM ON A MISSION TO HELP HER SON AND SAVE OTHERS. >> LET THEM KNOW SOMEONE IS PAYING ATTENTION, ONE MOM IS PAYING ATTENTION AND SHE WANTS HER LITTLE BOY AND EVERYONE WITH CYSTIC FIBROSIS TO HAVE ACCESS TO THESE INNOVATIONS IN THE UNITED STATES.